Strange Leg Pain??

    • Anonymous
      August 20, 2010 at 11:40 am

      Hi There!

      Okay … so I had GBS almost 4 years ago. Basically I have had the usual residual stuff for me which is face drop, mild tingling in feet and hands when I am tired pretty stable for the last couple of years.

      Earlier this week I got a fever (likely from my son who was sick). Then as the fever got better, I noticed my legs hurt. At first just my left knee area, then my right inside calf area, then it spread so now it is pretty much both inside calves area, sides of both legs from hip down to ankles, and minor on my shins, Equal on each leg and in the same spots.

      So now it is this strange pain and my hands are pretty tingly today.

      The pain fees like I am bruised all over but there are no marks and I didnt fall down the stairs! Hurts to touch even lightly … sleeping is hard to roll over but once I have moved there the pain eases it is just the inital touch and pressure.

      The scary part is when I was in the ICU for GBS they were putting those stocking things on and when they put them on, it felt like they were ripping EVERY hair out of my leg … now when I run my hand up my leg … this is what it feels like.

      Anyone experienced this or something similar? I am not sure if this is a GBS thing or something different and I am a little worried.

      I was thinking to check with my Dr. but I am on day 2 of my back to work from mat leave!

      Any help is appreciated!

    • Anonymous
      August 20, 2010 at 8:18 pm

      My first thoughts are:

      Have you had a fever before this since your GBS?

      If not, your body may just be extra sensitive now to changes and the stress of a fever. I know that the first time I got sick, it made me feel really weird. My tingling that had been going away, felt stronger. When I was extra stressed, the tingling and some numbness seemed to return, but subsided when I was less stressed. It still happens, even now.

      I see you just started back to work. I would suggest that the stress on your body of the fever, combined with the stress of going back to work [B]might[/B] be flairing up residules that you thought were gone. It has happened to me and it isn’t fun at all!

      Do you take any pain medication such as Neurontin, Cymbalta, Lyrica, etc.?

      If not, you may want to talk to your doctor about starting one, if only for a little while.

      If you are, maybe a temporary adjustment to dosage will do some good.

      I remember when I was first out of the hospital (I am now 5 years post), EVERYTHING caused pain. It slowly subsided and I am now mostly pain free.

      Also, I have found that when I do things now, my body sometimes reacts strangely at first, and then settles down to “normal”.

      Just remember, illnesses are much harder on the GBS body than they were before.

      My ultimate advice is: If you are really concerned, don’t be afraid to talk to your Neurologist. If they are good, they won’t put your fears aside and blow you off. They will listen and take your concerns into consideration and help you the best way that they can.

      I hope this helps. Let us know how you are doing.

    • Anonymous
      August 20, 2010 at 8:41 pm

      Just remember that even if it is your second day back, it is better to see the doctor than reexperience GBS. I do have these residual pains like that every so often. Good luck.

    • Anonymous
      August 23, 2010 at 4:06 pm

      Hi Sharon! I just had my 4yr anniversary w/ gbs. And for the past almost 3 months I to have been having terrible leg,feet pains it differant from the gbs. I asked my rheumotoligst, no answer from her. Asked my ortho doc and again no aswer from him. This week I see my primary doctor and next week I see my neurologist. It is making me crazy!!! Sorry I don’t have any answers yet, but, if I get some help from one of these doc’s I’ll be sure to let you know. Be strong….I think all us that have gbs are!

    • Anonymous
      August 25, 2010 at 8:26 am

      Thanks everyone!

      I am starting to feel better. Who would have thought that after so long of being pretty stable I could have a spout like that? I really thought I was doing well and have never had a residual pain like that (only during my GBS) … for the last two years I just have a face drop and minor tingling when I am over tired but this hit me pretty hard and scared me!

      dolphnlvr8 I think you are right and the fever really did me in. I hadn’t really thought about it but I bet that was my first real fever since I had GBS.

      I went into panic mode so I am sure that doesn’t help my symptoms either. My feet went numb and the whole works.

      But then over the last little while they gradually settled down. Now the leg pain is pretty much gone and the numb and tingling is intermittent.

      Good luck Margaret Mary! I hope it is nothing for you. Please let me know how you make out though.

      Thanks again!